Natalia's AVS reports

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Hi Dr. Grim,I doubt that you got my attachment. I am eager to read your comments on the results of AVS and the conclusion of my nephrologist.Thank you very much.Natalia ----- Forwarded Message ----- From: Natalia Kamneva <natalia_kamneva@...> "hyperaldosteronism "

<hyperaldosteronism > Cc: Dr. Clarence Grim <lowerbp2@...> Sent: Monday, March 5, 2012 4:52 PM Subject: Re: Re: adrenal vein testing [1 Attachment]

Ms. Abdallah,Attached, please, find some results of my AVS and the conclusion of my nephrologist. It was done in August 2011, but I got it only recently. Dr. Grim told me practically the same thing about 6 -8 months ago. So yes, even if I have a huge left 3 cm adenoma, my PA is bilateral according to the results of AVS. Even my right side produces slightly more hormones. And it's a common case according to Dr. Grim.>So what if it does turn out to be bilateral..then what?I only can give you my advices, what would I do in this case. It's up to you to decide. 1. I would IMMEDIATELY go to low Na/high K

diet.2. I would ask to prescribe me Inspra or spiro.3. I would go on private consultation with Dr. Grim. I will not overestimate anything saying that he saved my life.4. I would do all tests that Dr. Grim and your team recommend to do to figure out what happened.5. I would prepare to tomorrow's appointment very well. I would be especially interested to get all prove that the doctor has, that it's not bilateral. 6. After all of that it's a long road to regulate your diet and your dosage/medications. It's not that simple at all. Just remember, we are still lucky, that by a medication and diet we can control this disease.Good luck with tomorrow. Natalia Kamneva 67

Russian F with 3 cm left adrenal adenoma, diabetic; on 100 mg eplerenone, 80 mg Micardis, 2000 mg metformin, 60 mg Dexilant and 2 mg Lorazepam; Dashing; still have some occasional problems with BP, K and Na; on private consultation with Dr Grim. From: Kalthoum Abdallah <kattabdallah77@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 3:45 PM Subject: Re: Re: adrenal vein testing

Natalia,So did AVS confirm bilateral in your case? which side was your adenoma on? My appt. is tomorrow. My BP is not going down at all, and I'm having so much muscle weakness. I'm sure I'll have Aldo/Renin/K labs done. So what if it does turn out to be bilateral..then what? From: Natalia Kamneva <natalia_kamneva@...> "hyperaldosteronism " <hyperaldosteronism > Sent: Monday, March 5, 2012 12:53 PM Subject: Re: Re: adrenal vein testing

,You yourself don't go to a surgery without AVS, do you? If your doctor has been very nice and friendly and confident, would you? Doctor's opinion cannot substitute the results of tests, even as inconclusive as AVS is. His (or her) doctor is very nice because she is defending her own opinion and it seems to me, that she feels guilty, because not everything is going the way it should go. I don't bye your argument about the cost of AVS. There are always ways how to do it if you don't rush to a surgery. I just can pray that you are right and everything is okay with this person and

going to be better in a year. Statistics shows it's about 50/50. My experience: big adenoma, very bad feeling, all doctors insisted on an immediate surgery. AVS showed that it's bilateral despite the almost 3 cm adenoma. The doctors still insisted. The oncologist looked at an image and said "No way. No surgery for this adenoma " And BTW, when all doctors insisted , they all agreed that my condition is not going to be better after surgery. Natalia From: <jclark24p@...> To:

hyperaldosteronism Sent: Friday, March 2, 2012 5:58 PM Subject: Re: adrenal vein testing

You are certainly entitled to your opinion BUT it is only an opinion and I am not sure what you are basing it on. My comments are based on research of recent trials and studies and the "best practice" results developed from them. I specifically remember the 40y/o decision point and the discussion at the time. Know that this is NOT her doctor's choice if it is "best prctice" because that is what the insurance carrier will mandate, of course she can always pay the $25,000 out of pocket if she wants!

It is too early to declare the opertion a failure from all I've read. In fact, as her doctor pointed out, the immediate K resolution is a positive sign. I've referenced where it sometimes takes up to a year to see the total benefit and, as Dr. Grim often points out, total resolution of HTN from the operation is often not attained (A point he uses for a strong recommendation of using MCBs nd DASH.) That's a different discussion!

And finally the fact that the doctor wrote a response a couple days prior to a face 2 face appointment spoke highly of her doctors concern and professionalism IMHO. Most of us would have heard nothing or got a call from an nurse. (Possibly a call from the doc but highly unlikely) The written word takes the most effort usually, leaves no room for misinterpretation, and allows the PTN time to review and be ready for any followup when they meet. It speaks nothing of the accuracy or knowledge but certainly gives you an opportunity to verify or refute and I respect her for that!

Maybe you could explain where you think she went astry.

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> > >> > Question regarding avs testing. I had an adenoma on my left gland removed Feb 2nd. Potassium has since returned to normal range 5.0 actually. BP remains on the high side, around 160/105. I never was offered AVS test. Having severe bouts with anxiety, irritability, like PMS times 10, most of the time! My family is fed up, I'm frustrated! Is it posible I had bilateral aldosterone over production? I have endo appt. March 1st. I've requested aldo renin tests again. Anything else I should ask the Endo? Still taking hctz 50 mg. Took myself off Amlodipine10 mg, Lisinopril 20 mg, and Atenolol 50 mg.

> > >> > Thanks guys

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